Going Off MS Drugs: A Thought Process

I have had unexpectedly positive results from some multiple sclerosis meds. I have had side effects which made others intolerable. I look at the cost (both total and out of pocket) of what my next steps might be and what benefits I might — might — expect from a treatment. I am processing the idea of going/staying off MS meds for a while and felt it might be worth a discussion.

Like many of you, I started disease modifying drug therapy within weeks of my diagnosis with MS. This was back in 2001, back when we had to mix the drugs ourselves before injecting them, and the choices were less than half of what is available to us today. Now, there are far more choices of medication, delivery system (injection, infusion, oral), and frequency of dosing.

All of the approved therapies slow the “rate of progression,” if you will, by reducing the number and severity of relapses. They would not have been approved if they didn’t show that benefit.

They also all cost exorbitant amounts of money (and have for far too long in some cases). All have undesirable side effects and a cost (not monetary) to benefit ratio to consider.

My specific considerations also include my impending move to another country. Availability, transportability, familiarity: all of these factors have to go on my scale as I weigh the options. No sense, for example, to consider using a particular drug if the emergency procedures (if I were to need them) are multiple hours away and the expertise in diagnosing the need non-existent in the general vicinity, either.

And then there is part of me that wonders if it really matters anyway.

There are those who would chime in and call me crazy for even considering going off meds, others who will not believe that I’ve taken this long to come to their “side.” To state that this is a personal choice is easy. To live this as a personal choice can be difficult for those who have already made the choice for themselves.

I am not a person who believes that diet and supplements and alternative medicine and, and, and… will stop my MS, will slow my MS, or will affect the course of my disease in any appreciable way. I do think that there are things I can do to make myself “healthier” in ways outside of my MS. I understand that a health body stands up to attack better than an unhealthy one. I think there are things I can do that will make me feel better even if I’m still living with a progressive disease.

I also can infer from conversations in which I have been directly or indirectly involved that I am not alone in this decision making process.

Knowing that there are many who are impassionedly (and knowing that passions are not necessarily the best basis for these decisions) on both sides of this subject, I ask that we check our passions as we comment and discuss the ideas.

The idea of going off MS meds isn’t like stopping chemo and radiation for a cancer patient who has tried everything and is giving in. Or is it?

Caryn (who some of you have now “met” via the Momentum article) and I are having those famous “kitchen table” conversations over this topic and suspect that many of you have as well. I once again invite you into the topic, and we’ll see if we can’t all benefit from our collective experience.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more